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MyFathersDaughter

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HI All - Its been a bit since I have written - lots going on in the family to say the least!
Quick question for anyone .... In the early stages of ALS - does one seem to have good days and bad days. I know this is a progressive disease - progessivly worse that is - so how can it be that we think my Dad is looking better than he did 2 weeks ago ? The emotional rollercoaster is so hard. Especially watching my mom go through this all is just horrible. Any thoughts would be helpful! Blessings to you all!
 

paula B

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Well maybe he is eating differently. Maybe he is sleeping better so he feels better and looks better. Perhaps he has accepted this all and isnt as stressed as he was befor.
At any rate,,i hope he feels as good as he looks.
Take care
PaulaB
 

MyFathersDaughter

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Thanks Paula - you are right - that is kind of what we have said too - we also relate it to just getting use to his weakness and learning to compensate now - BUT ... it also is always going through our minds that maybe it is not really ALS - which is rather torterous to put ourselves through... the unknown with this horrible disease is the worse - Blessings to you !
 

CindyM

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Let's see what some of the more experienced members have to say. I can tell you that there are days when I feel strong, and days when I pray for strength to lift a finger. Everyone tells me I look great. But even on days when I struggled to move, I've seen photos of me that were taken on those days and I am surprised at how healthy I look.

I think that is why it takes so long to get a DX. Both my primary and my Neuro think I have ALS and sent me to the ALS clinic for a second opinion. The doctor there is very conservative and is waiting for more clinical proof that can't be explained by anything else. So I can see why this process is confusing.
 

marlo

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Feb 20, 2006
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MyFathersDaughter said:
HI All - Its been a bit since I have written - lots going on in the family to say the least!
Quick question for anyone .... In the early stages of ALS - does one seem to have good days and bad days. I know this is a progressive disease - progessivly worse that is - so how can it be that we think my Dad is looking better than he did 2 weeks ago ? The emotional rollercoaster is so hard. Especially watching my mom go through this all is just horrible. Any thoughts would be helpful! Blessings to you all!

Hello,

I can only answer for myself but that is exactly how this disease has worked with me. I was real bad during the diagnosis. Then i seemed to level out for a while. Then i actually seemed to get better for short periods of time. But each time i have a bad spell, i seem to get a new symptom. It has my doctor puzzled too, so we just wait and see what will happen next. It is frustrating, cause others with it seem to go down hill so fast, and have none of these ups and downs. I'm thankful for the good days,, but i don't understand them. And just about the time , you start to let yourself think,, maybe ,, you don't have ALS, or maybe it has went into remission etc. it flares up again. I know this doesn't really help,, but at least ,, you'll know,, your not alone.
I pray you have many more good days,, to share together.

Love and Prayers
Marlo
 
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